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I first noticed a lump in my neck in october 2017 and my feb 2018 I was having an ultrasound and an fna. These both came back fine and I was told I have cystic thyroid nodules. Later in 2018 I became pregnant and noticed the lump in my neck hd doubled in size and saw an endocrinologist who checked my thyroid function and all came back ok, I was sent for another scan and fna but the woman refused to do the fna as she said it was just a nodule on the scan. Fast forward to october tbis year and I had a right lo economy due to the size of the lump (6x4x2cm).
Everyrhing went as planned.
However last Wednesday I recieved a call asking me to come into clinic the next day, apparently they found papillary thyroid carcenoma in the lobe they removed and so I'm waiting for my consultant to make a decision on the next steps. I only had surgery 5 weeks ago and the prospect of foing through it again terrifies me, on top of that I am in the middle of applying to university (mature student) and I have 4 children under the age of 8 and so if I have to have the iodine treatment I dont know what I'm meant to do?!
Everyone keeps telling me it's fine and that it's not like I'm going to die..
Why cant I just grieve my cancer and not be made to feel guilty?!
Oh you have had a rough time, and I imagine the thought of cancer is never far from your mind.
I found the prospect of RAI worse than the actual treatment. As your lump was fairly large they will recommend you have the treatment. Most people are advised to go on a low sodium diet for 2 weeks before, luckily for me my consultant doesn't think it make a big difference. You then then receive 2 injections on consecutive days and will be admitted on the third. You are on complete isolation, in my case food was left outside. On the third morning I was allowed home with some restrictions. I am in Scotland and the restrictions are much tougher. With young children you probably won’t be able to be with them in the same house for a few days. This may seem hard but it’s only 1-2 weeks of your life.
I felt lonely as I felt people didn’t understand my treatment. I also felt lucky by my treatment as when I went in for RAI I spent 4 hours on the chemo ward waiting to be admitted and I saw very sick frail people.
Dont feel guilty as everyone is allowed to be sick
Hopefully this helps you find some comfort...I had a similar experience to you. 4years ago, At a follow up appointment for knee surgery, the consultant noticed my neck looked enlarged. This kicked off the investigation where they found a 27mm nodule under ultrasound but I was assured that it didnt look sinister or have any red flags. They decided to conduct regular scans over the following years. The nodule then started to protrude on my neck but the said from the scans the size hadn't changed? I pushed them for a FNA which was inconclusive. They then proceduraly had to conduct a 2nd FNA which was also inconclusive. This then also proceduraly led to a hemithyroidectomny. Fully expecting the biopsy results to be nothing, I was floored when they told me I had papillary thyroid cancer (follicular variant)...27mm and 1.5mm tumours. 4weeks later I had a precautionary completion where they found 2more small tumours on the other side. I had no capsular or vascular invasion and none of the sampled nodes had cancer. Even though I had gone undiagnosed for years, I was made to feel I was worrying unnecessarily due to the nature of the disease (slow to grow, slow to spread, etc). This is a ridiculous and futile attempt to ease people's worries. Cancer is cancer and you shouldn't be made to feel guilty about it. No one can know how a cancer diagnosis feels until they get one.
I was given the option of RAI 3months later. Like runner, I was waiting in the cancer ward for admittance when I seen a poor young girl who was feeling the effects of brain surgery and chemo. I too felt guilty for being there. I found the isolation strangely relaxing and because I had a lower dose of RAI, I had no symptoms from the treatment. I'm now 9months on from that and still under TSH supression (taking higher than required doses of levothyroxine to drive down TSH). Fully expecting to be buzzing around the place, I've felt flat and really struggle to sleep. I'm going for my stimulated Thyroglobulin test in a couple of weeks and will have an ultrasound. Hopefully if everything is ok they can cut back my levothyroxine abit.
You're not alone in your feelings. Everyone in this group has felt this confliction. I still feel quite angry at them getting my diagnosis wrong. When you feel up to it, I'd recommend going to your local Macmillan centre or trying to contact the butterfly thyroid trust. Butterfly are a dedicated thyroid cancer charity setup by a thyroid cancer survivor and they have a great DVD that explains everything...it really put my mind at ease.
Stay strong and dont be too hard on yourself.
You should definitely not be feeling guilty and it’s easy for people who are not going through what you are to make comments like “you’re not going to die”. You have had a cancer diagnosis and that is something that’s very difficult to get your head around. I know where you’re coming from about feeling guilty as my particular condition is regarded as low risk but it is incurable and I’ve had a couple of really bad infections which required me to be hospitalised. My treatment has few side effects but I do suffer from bad fatigue at times and get periodic nausea. Most of the time I’m doing reasonably well and compared to many I meet at our local unit when I am down for my 12 week reviews I am having a relatively easy time. That has led me to feel guilty when I’ve had any feelings of anxiety. I had counselling which I found helped a lot and also taught me to give myself space and be kind to myself.
It’s important that you also be kind to yourself as you go through this. I’ve found this site to be really helpful as people on it understand the impact of getting a cancer diagnosis and the associated emotional roller coaster that comes with this. Take care and remember there are always people here who are going to be there for you.
The waiting is always the worst bit, whether it's waiting for results, for appointments, for decisions, whatever it is you're waiting for - it's just the worst. That's when your mind decides it has free reign to imagine every worst case scenario as if it might actually happen. Helpful, isn't it!
You mention the size of your lump, but not the size of your cancer - these are, or can be, very different sizes and sometimes the cancer isn't even found in the lump. Do you know where it was found or how big it was?
As Runner mentioned, if you do have to have RAI then there is a recommended diet to follow beforehand. However it's a low iodine diet rather than a low sodium diet, so those will have very different things to avoid if you need to go down that route. Then, in regards to your kids, there are tips and tricks to help you get back to them ASAP, and a lot of people on the forum have gone home from hospital with no restrictions and able to see their kids immediately afterwards. However it's very individual and differen't for everyone, so there's no guarantees and only best guesses.
When it comes to thyroid cancer, it has a very low death rate and because of this people and doctors alike seem to think it's a 'good' one to get. When you look at it from a doctor's point of view, you can see what they are trying to say about it being a good one, but that really doesn't lessen the fact it's cancer from a patient's point of view. So ignore the people who are trying to be helpful and make you feel better, and try to take their comments as they are meant - as well wishes - and you just do you.
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
I had an appointment with my consultant this morning and he said the cancer was 4.5cm .
I'm having the left lobe taken out either the end of december or beginning of jan.
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